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Liver problems after initial all clear

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eric89660
eric89660

We all know the routine whereby we have an initial ultrasound,etc to see if we have any liver damage due to iron. Mine was thankfully okay. I was thinking that I’m not aware of anyone who has initially been okay having liver problems later on. As most of us have annual ultrasounds I assume that there is still some concern, Has anyone developed anything later that they would like to mention? I would have thought that our ongoing risk would have been the same as the general population but the fact that they look at us closer suggests otherwise.

0 likes, 19 replies

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  • ellen12819
    ellen12819 eric89660

    Posted

    Hi Eric,

    My belief is if at first you are clear and get to maintenance.  If you continue to do the things required, : regular bloods, not eating or drinking iron supplemented products (anything with white flour), know when to drink orange juice .. vit c (half hour either side of food) avoiding or stop having alcohol, not eating any raw seafood, keeping red meat for occasional treats, keep yourself extra hydrated (water water water) , donate regularly if allowed or have the Venesections required. In theory you will avoid fatty liver or toxicity caused by iron.  But if you have a lapse in your checks and allow the iron to climb unchecked then you could have consequences. Obviously there are conditions outside of GH that may appear but as far as GH is concerned regular screening of your blood will show up any anomalies. Less stress and keep gently fit and you will be fine. We all need someone to say it out loud sometimes Eric, it is what we do not know that scares us. I hope this is reassuring.  

    • eric89660
      eric89660 ellen12819

      Posted

      Thanks Ellen. It’s always nice to receive reassurance. Hopefully no one will say they did develop problems but I would be interested nevertheless. I must ask the gastro why I still have an annual ultrasound.
    • ellen12819
      ellen12819 eric89660

      Posted

      If you are getting them you are lucky, some have never been offered one. Your numbers could have been at the least borderline elevated in the begining, It I expect is precautionary. Are you part of the facebook group ? There is very good advice and it is overseen by Haemachromatosis uk , quick answers by people who know. Give it a try.
    • eric89660
      eric89660 ellen12819

      Posted

      Yes,Ellen. I am on the UK Haemochromatosis Facebook Group,where I have posted on occasion.My ALT was up to 65 before I had any treatment but went back to normal (now consistently at 16) after I gave 2 or 3 pints. All my other numbers were in range but my ferritin was 1486. I got the impression that it was their policy to do it every year. Perhaps they won’t bother now that I’m in maintenance.
  • nickkubricht
    nickkubricht eric89660

    Posted

    Ultra sound.  These doctors made me do a biopsy which will never happen again.  Lol.  

    27 yrs old just for the record and results came back with fatty liver and iron deposits.  I started off giving a pint of blood a week for a year and now I haven’t had to give any for 3 months.  With all that being said I have learned to cope with all the symptoms.  I’m assuming I need to do a ultra sound though?

    • eric89660
      eric89660 nickkubricht

      Posted

      I managed to avoid the biopsy after my genetic test came back as C282Y/C282Y,but the gastro initially wanted to do it. Perhaps some consultants are more keen on ultrasounds than others. Perhaps others can chip in with their opinions on this. Let’s hope this is a good omen that no one has put that they got liver problems after being deironed.
  • nickkubricht
    nickkubricht eric89660

    Posted

    The only real symptomI have as of current is my liver hurts daily from the biopsy and I remedy all the other symptoms with CBD oil.  I highly recommend the cbd oil.  2 drops under the tounge and no more joint pains or hand pains.  No more fatigue or occasional depression.  I researched the hell out of this cbd oil and found that by ingestion of the oil it processes thru the liver and to be honest and this is just my case I don’t want to lead everyone to believe it’s going to cure them but weeks after taking it daily is when I started to see my results improve drastically. My dr asked (so what are you doing differently nick) and I replied with cbd oil.  I urge everyone to at least try it.  But please research your product some oil company’s don’t filter it thoroughly and may have traces of thc due to the oil comes from the marijuana plant.  I was using a brand called (diamond cbd) and yes they are all priced high but for what it’s worth I had nothing to lose.  

    • lynnsk1
      lynnsk1 nickkubricht

      Posted

      I would love to try but they all seem to be called diamond cvs oil. The worst pains I have are in my hands/ knuckles , can’t bend my wrists so hands are flat anymore when I’m exercising, totally frustrating and debilitating
  • lynnsk1
    lynnsk1 eric89660

    Posted

    I have cirrhosis of the liver caused by iron overload so yes if you are undiagnosed GH or HH excess stores in your vital organs. Take your pick?
    • eric89660
      eric89660 lynnsk1

      Posted

      What I was thinking was that if I have avoided liver damage before I was treated then does that mean I am at the same risk as the general population. Or do some of these iron deposits stay there even when our ferritin is down to 50? I am glad that no one so far has said they did get problems afterwards but wondered if there was any anecdotal evidence of it.
    • sheryl37154
      sheryl37154 eric89660

      Posted

      Hi eric, from all my reading and talking to people with haemochromatosis, as long as we are receiving the appropriate treatment, we should not get anything worse than what we started with.  Except if we are drinking too much alcohol and consuming too much sugary foods, which is a problem even with those who do not have haemochromatosis.

      I never had an ultrasound on diagnosis, but years later and reasonably recently I asked for one.  It was clear, so if I had iron deposits in the beginning they were gone.

      I was referred to a haematologist on diagnosis, and my husband, who also has haemochromatosis was referred by his dr to a gastroenterologist.  His liver function tests were ok.  It is just that gastroenterologists believe they 'own' haemochromatosis and 'diagnose' with a biopsy and ignore genetic tests.

      The gastroenterologist said to my husband that he does not have haemochromatosis unless the gastro says he does.  We did not go back.  A biopsy is totally unnecessary to diagnose haemochromatosis and has its own dangerous problems.

      An ultrasound or an MRI will diagnose if there is cirrhosis or cancer too.

       

    • eric89660
      eric89660 sheryl37154

      Posted

      Hi Sheryl. Yes, I have been less than impressed with my gastro and read many patients who feel the same way. 
  • lynnsk1
    lynnsk1 eric89660

    Posted

    Yes if you have good liver on diagnosis then you probably just the same as everyone else but as you have HH you need to keep in maintenance I imagine. 
  • bruce97898
    bruce97898 eric89660

    Posted

    The ongoing risk depends entirely on how high your ferritin got.  I was diagnosed at 4,000 and had what was diagnosed as cirrhosis that was later downgraded to mild fibrosis.  I’ve had a biopsy and get a scan every six months.  So far so good.  If you were caught early you have only higher risks than the general population.  If you were over 1,000, even after deironing, you will always have a higher risk than the general population.  
    • eric89660
      eric89660 bruce97898

      Posted

      Thanks Bruce. I was just under 1,500 at diagnosis. I can live with an extra few percent risk. My friend was 5,500 and he got away with fatty liver despite being a heavy drinker. He is 75 and I’m 55 and a moderate drinker.You would have thought they would make more effort to find us early being as I’d been going to the doctor with red flashing lights for years.
    • lynnsk1
      lynnsk1 bruce97898

      Posted

      I also have cirrhosis and was 2000 when diagnosed when I was 60, 61 now had weekly vs , was down to 39 &44% but gone up to 44 & 88% for some reason , my liver was said to be stable so hoping like you it goes to mild instead of higher.i try to eat healthily and I don’t drink any alcohol at all.May have gone up because of arthritis or something, I’ll find out Ona. A couple of weeks at my consults apt. Glad your sorted 👍

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